Merrill

Hi, John ... You asked a lot of good questions ... You might check out the many links MightyMouse posted in her "answers to common questions" post that is pinned at the top of the Forum general discussion main page. I think this link will take you there, but you can access it any time. There's a lot to learn ... I hope this leads you to some answers. http://dinet.ipbhost.com/index.php?showtopic=1954

Corina, no I haven't tried it myself--I'm not sure my symptoms warrent it at the moment. Dementia runs in my family, both sides, and I am likely to suffer it too someday. The next time I have blood work done, I'm going to ask them to check my homocysteine levels... I don't expect them to be high at this point. There's another supplement similar to cerefolin called Foltx. You might read about them on the internet if you're curious and then talk to your doctor. Take care, m

EM, that's a great idea! It's funny (sad?) -- in my pre-ambien days, if I was having trouble sleeping, I'd play that tape over and over in my head and make myself sicker. But from time to time I'd get myself up and turn on the light or go in the other room and write everything I'm thinking down on a piece of paper or in a notebook--whatever's handy. It really WORKS--takes the anxiety out of my head and puts it onto a piece of paper that I can set aside and then relax and fall asleep. (This is good practice during the day, obviously, too.) I never tried it in the disciplined way you describe--where you go back over the ideas and comment upon them. Very interesting idea! I love it! And I'll give it a go sometime. Thanks!

BLW, I hope you're not too worried. I've been reading about cerefolin a lot since learning about it on this forum--and i've been trying to get some people in my family tested for high homocysteine levels ... I looked up a couple things after reading your post; this may or may not help /... it answered some of my own questions, though, so I thought I'd post. The following is from the March of Dimes Web site. What is the difference between folic acid and folate? There are two important differences between folic acid and folate: Where they are found. Folic acid is the synthetic form of the vitamin that is used in supplements and fortified foods. Folate is found naturally in foods, such as beans and other legumes, leafy green vegetables and orange juice. How the body uses them. While the body almost completely uses synthetic folic acid, it only partially uses natural folate. B6 is B6, and it's not the same as folic acid/folate. The package insert at www.cerefolin.com shows that this supplement includes B6, B2, B12, and methylfolate ... Cerefolin is NOT a high folate-only supplement ... and it's been proven in many studies to help slow dementia. (Which isn't why people here take it, I realize.) But since it's not folic acid only and it does include a high dose of B12, which the article says slows dementia, then I think we oughtn't get too worried? best to you and your husband, m

JLB, did you ever read the article EarthMother posted March 24? (Topic: Palpitations)? If so, it's worth rereading; if not, take a look. You may find it comforting. I know I did. http://dinet.ipbhost.com/index.php?showtopic=2134 PS That article you posted is about Pure Autonomic Failure and Multiple System Atrophy ... extraordinarily rare diseases that are not the same as the syndrome of POTS! I don't think you've been diagnosed with either of these--no one on this forum has been. Please do not worry about the article...the palpitations & tachycardia you're experiencing are NOT fatal!

I don't have problems with syncope and so I don't have problems driving. In fact, I love it. I do find myself lost sometimes. While my sense of direction is pretty decent, I space out behind the wheel and forget what I'm doing and where I am and where I was trying to go. I never feel a danger to myself or others, though; I'm a good driver and always know where other cars are in relation to my own. Dan mentioned neck and shoulder problems ... so I'll add that my horrible posture behind the wheel definitely contributes to the pain caused by 2 bulging discs and cervical spine arthritis etc. Or rather, the posture caused the disc problems ... I try to practice my PT exercises when I'm behind the wheel. Susie, do you pass out while seated? best, m

lthomas521--are you a doctor? Just curious...

Actually, I kind of like it the way it is -- I can vent a little, explain how I'm feeling or what happened... and then ask a question about whether medication might have been a contributing factor. I'd pull my hair trying to figure out whether I've categorized my post appropriately--and then worry that I put it in the wrong place or that people would miss it. I've never tried the advanced search function that EM described; sounds cool, though. m

You're undoubtedly suffering extreme dehydration from alcohol abuse poor diet. Take a look at these web pages for advice. http://my.webmd.com/hw/parenting_news/hw60218.asp http://my.webmd.com/hw/parenting_news/hw60237.asp

I've had those neurological field of vision tests several years in a row, and for me, the results shows areas of "loss," for lack of a better word. I've had a lot of changes in my vision the last few years, but I think more of it is due to the aging process than to POTS. (I got glasses for the first time last year, and I only wear them for driving, movies, anything at a distance.) Although I do have very dry eyes and tons of floaters and an area of bluriness in my right eye that is not corrected by glasses. It's just a blurry shape that hangs out all day in front of my eye; very annoying! My ophthamologist, who's been my eye doctor for 35 years (!), doesn't know what to make of that. This stuff IS related to POTS I think.

Corina--re: sharp pencils: I'm an editor. And I can't stand dull pencils! Truly! I typically opt for a mechanical pencil when given a choice--but I have two regular pencils on my desk right now that are really bumming me out. (making me sad/mad ) Will you send a picture of your garden to Katherine when you've finished planting? Hope so! Sleep tight, and don't let the bedbugs bite. (That's an Americanism, I think, tho I imagine bedbugs to be pretty universal. ) m

Thanks for the cyber rose, Corina! Your post made my day too--I love the image of you scooting down the street, looking like a garden-on-wheels. I will remember that! (And forget most everything else. ) What makes me happy? Robins, crows, woodpeckers (all birds, actually, especially Jojo, my conure); cashmere; kalamata olives; candy; compression hose ; words that start with the hard "c" sound ; a good story with a happy ending; plums; a sharp pencil; the sound of waves; and mountain goats. These are a few of my favorite things; good thing you can't hear me break into song. (Corina, have you ever seen "The Sound of Music?" If not, RENT IT--right after "The Wizard of Oz." ) Cheers, everyone. m

Oh, m'gosh, Blackwolf... I wish I could say I relate! But I've never had a slow heartrate in my life ... I tapered my Toprol down to 12.5 mg a day from 25 and now my resting heart rate (sitting quietly at my desk, anyway) is 100 bpm. It was a little lower on 25 mgs, but never lower than 85 bpm. I imagine that it would feel scary to go so slow! Does it? Or are you OK? Maybe a strong cup of coffee would help ... it would raise your bp and your heartrate at the same time, I think. I'm glad you liked your new counselor! Sometimes counseling is hard work, but it's ALWAYS worth it, I think. Best to you, m

Angela, it's good to hear from you! I'd been wondering how your Mayo experience was and whether you had a successful trip. What's in store for you? Are you starting new medications? Will you be doing pirhouettes any time soon??? Hope you're on the mend, Merrill PS whoops--I just saw your other post! Let us know how you're doing on those vitamins etc!

Hi -- there are a ton of strings on the topic of compression hose--you can read lots of people's experiences if you do a search. Briefly, I love my 30-40 mediven thigh high compression hose; wear them every day, all day, morning to night, year 'round. (I ordered a pair of to the waist juzo's, thanks to emily; we'll see how those go.) They're not too hot in summer if they make you feel better. All that's to say, the amount of "better" they make me feel far outweighs how much hotter they make me feel. I don't feel "safe" without them ... I do other things to stay cool. merrill

Hey, that was me, Earthmother! I'm really glad to hear that cooling neck wrap helped you last year! Hooray! Another reason to smile tonight. Ok, I feel better now. PS Welcome here, SusieQ! We're glad you found us. Make yourself at home.

EarthMother--you really made me laugh tonight; thanks! You have no idea how much I needed that. Will the real WEENIE please go have good cry in the bathroom? Uh, Morgan, that would be ME tonight. I win the weenie award ... I went to yoga tonight ... and while it's quite common that I can't do all the poses or hold them as long as others (mind you, this is a beginner level class that focuses mostly on the meditation aspects of yoga practice ... and it's slow and easy, for the most part) tonight I had the worst experience in class EVER. ... We did this seated pose where you have one leg straight in front of you, the other one bent, with knee pointed to the ceiling. Then you straighten your bent leg, raised in front of you and hold it--then move it out to the side about 20 degrees or so and hold it for a count of ten. I couldn't hold it more than to about two or three before I had to put my leg down. When we did both legs together (making a kind of V shape, arms in back for support), I couldn't do it at ALL. My whole body was quaking! There were women twenty years older than me, in their mid to upper sixties on either side of me and they were doing this with no problem! I was horrified at myself... how weak my core muscles are, my abdomen. It's made of jello. No, pudding. (I've gotten so much heavier this year!) Anyway, I got up and left the class for a few minutes and cried my eyes out! Unbelivable! I rejoined the class in time for the final shivasana and couldn't really relax. I don't suppose riding a recumbent bike will strengthen my gut at all, will it? Or just my legs (which are made of spaghetti)? Kite, care to weigh in on this one? Thanks for reading my rant, m, who's feeling very sorry for her weenie self tonight

Vanderbilt does do studies that you can apply to be in (people have talked about getting "rejected") -- but they also have an outpatient clinic and you can make an appointment and be seen that way. But there's scheduling something like 5 or 6 months in advance.

I'm not even gonna try! (Although I'll bet "slapen" sounds a little like the yiddish schluffen, sleep) Too bad about the wooden shoes. m PS I'm doing OK! Thanks! Got a smile on my face now ... especially thinking about how much you're going to enjoy the Wizard.

Nina, I looked up the spartan sports bike and saw one that is both bike and rowing machine! It seemed pretty cool ... Is that the one you have or do you have the recumbent bike only one? I hope you feel well enough to do some riding soon ... I am soooo jealous about the long break you have coming up. It's so soon! Hang in there; it'll be here before you know it. When summer melts your stress away, you're bound to feel better. best, m

Hi, Corina. Here's something to help you remember. Imagine a farm ... Now imagine someone with POTS spending a few hours raking or baling hay or feeding hay to the farm animals. Now imagine that person fainting from exhaustion (or orthostatic intolerance). She'll hit the hay alright ... and while she's down, she might as well stay asleep for a while! Hitting the hay, as Emily says, is going to bed. What do you say in Dutch? Best, Merrill PS Can you rent movies there? If so, you've just gotta see The Wizard of Oz! It's what you call a classic...

Geneva, you're right! Good memory.

Hi -- if you do a search for "sleep study" on this forum, you'll find a ton of strings on the topic. I had a sleep study last summer ... it showed episodes of central sleep apnea (not obstructive apnea, which you can do something about, e.g., cpap machine) but no big deal and not treatable anyway. You should get a sleep study if you have some reason to think you might have apnea ... factors include being very overweight, snoring, waking with headaches and so on. (If you google "obstructive sleep apnea" you'll hit some key sleep sites and learn all about it.) I've got the insomnia thing going too, and now I take 1/2 or 1/4 of an ambien each night--it's enough to help me fall asleep and stay that way for much of the night. Mornings are hard ... I too feel very weak and lethargic and heavy-legged, and it takes me a couple hours to get out of the house in the morning. It's ok, tho; I just plan accordingly. take care, m

I know several people in recent months talked about riding stationary recumbent bikes as a safe and stable way to increase leg strength and get a bit of aerobic exercise. On the "potshole update" string, I asked what people were using because I'm thinking about getting this kind of bike. Gena suggested I post this as a separate string so it doesn't get lost (thanks, Gena! ) Laura wrote that she is "using her dad's machine, it is a Diamondback 1150R and was pretty expensive- I think around 1,500? it does have a heart rate monitor strap plus the monitor on the handles ( you rest your hands on the handles and it gives you a readout) It is magnetically run, so you never have to plug it in or use batteries- pretty cool machine. I am looking at getting my own and I think I will get the Diamondback 400RB. It is $549 amd runs on two 4dd batteries. It still has the monitor on the handles but you'd have to get the chest strap separately. I haven't really looked into other brands because I really like the one I've been using. It is alot of money to put out, so it's good to check stuff out!" And Morgan wrote that she likes the recumbent bike because "it is the easist thing so far for me to use. We got a SportsArt C51R. It has a lot of options and even the seat is electric for those of us not strong enough to screw down seats. I think it is a very good thing, I only do a few minutes a few times a day on the very easiest cycle, as it's killing my left groin (MRI tomorrow) But I am happy we got it. It's about mid price range I guess. And my son is doing well on it too, hence getting an electric adjuster, I am 4'11 and he's 6'1." Anyone else care to share their recumbent bike success (or failure) stories? If you possibly can, tell us the make and model of the bike you like! Thanks, all. m

Thanks, Laura. With whom are you doing this study? Sounds interesting ... Would you mind giving me the bike's model number? Does yours have a heart rate monitor? (I saw one advertised that automatically shut off when your heart rate got too high...) I'm going to look into your brand and the one Morgan named. There are so many kinds--from the simplest belt-driven kind that only costs a couple hundred bucks to the magnetic kind with all sorts of heart monitors & gadgets that costs a couple thousand. I'm just not sure ... we'll have to test "drive" a few, I think.